The Whispered Roar
— Shawna Barnes

Last month, when my son, Caden Degen, turned 21, I celebrated it publicly by acknowledging my perspective on what it was like for him growing up, given my myasthenia gravis (MG). This…

I’ve lost 20 pounds in three months. Crazy, right? In previous columns, I discussed some of the “aha” moments I’d experienced while taking high doses of prednisone to manage my myasthenia gravis…

Guess what I did last week? I took a shower standing up! Who cares, right? Well, I do. Because it was a win, however small. When you have a rare disease like myasthenia…

We all do it. There’s a reason we have the phrase “keeping up with the Joneses,” which everyone knows and understands. For some reason, we want the outside world to see our lives through…

Shedding tears in frustration. Missing football games. Giving foot rubs and having heart-to-heart conversations. Being teased because I was in a wheelchair. Raising a boy to become a young man is hard enough without…

What do you do when you are awakened by your son telling you that a dead tree just fell on his stepdad’s head? For me, a switch flipped, and I went into medic mode,…

So you have myasthenia gravis (MG). Some of your friends or family have distanced themselves from you. You take handfuls of pills every day to kinda-sorta function. Life isn’t what it used…

For the first time since my medical retirement from the U.S. Army in 2011, my myasthenia gravis (MG) is stable enough that I felt comfortable traveling 12 hours to North Dakota to go…

The eye roll. The “I’m not listening but want you to think I am” head nod. The silence. The outbursts. Any or all of these have been responses I’ve received from people who…

“Umm … are you OK? Why does it look like you’re having a stroke? It sounds like you’re drunk. What’s going on? Why are you choking on our dinner?” When your date has…

My hygiene sucks. All of it. It’s better now, but that’s because I swallowed my pride and admitted to my husband (and caregiver), Justin, that I needed more help than I was asking…

Sixty-one days, 8.7 weeks, two months, or one-sixth of a year — that’s how much time I spent at medical appointments in 2022. When I stop to look at the numbers, it’s…